The head of Harlesden’s sickle cell charity has appealed Boris Johnson to not ignore small organisations when it restructures Public Health England.

John James OBE, chief exec of the Sickle Cell Society (SCS) has sent a letter to the prime minister, urging him to not lose “valuable partnerships” with small charities and the world leading-services those partnerships provide, when considering the restructure of PHE.

The government plans to abolish PHE and replace it with a new agency that will specifically deal with preparation for pandemics.

Mr James said: “Smaller charities play a crucial role in health care in England, providing valuable insight and support for PHE as well as representing diverse communities which are often ignored. It is vital that the restructure of PHE must consider their contribution to the public health agenda.”

He said more than 70 health organisations including some of the largest health charities in England, have written to the Prime Minister with concerns about the future of PHE.

The SCS has written to make sure that smaller charities are also included in all future plans.

Some 15,000 people in the UK live with sickle cell and 270 babies are born with the condition each year. The disorder can cause excruciating pain, severe infections, strokes, chronic fatigue, delayed growth and progressive tissue and organ damage.

Mr James said: “Sickle cell is currently a perspective that is missing from the debate despite the UK being a global leader in regards to a national screening programme for sickle cell.

“The sickle cell screening programme leads the way for screening programmes across the globe.

“The programme is run by PHE and its strength comes from the close and effective collaboration with patients and the SCS, as this ensures that the screening programme is meeting the needs of those at particular risk of sickle cell.

“It is through this collaboration that the programme has been recognised as a world leader.

“The letter urges the Prime Minister to ensure that this decades-long collaboration and world leading service is not compromised because of the PHE restructure, in favour of other high profile public health priorities.”